The Clark Family's Story
My husband, Dustin Clark, and I are both living with MS. I was diagnosed before Dustin and I were even married. We have been married 16 years now. I remember that I tried to talk him out of marrying me! But he knew what he was getting into.
We just have to take it day to day. For the most part, I do okay, but there are times when things have been bad. When my hands don’t want to work, Dustin has to tie my shoes. Now, I get to do that for him, too. Being a caregiver is a different experience, and now I’ve seen both sides of MS.
Medication is a nightmare! I have to get approved each and every year. It takes 6-8 weeks for this process. Each year, they deny my medication, and I have to appeal. I went without my meds the entire month of January. If I didn’t have insurance, my drugs would cost $5,000 a month. It is estimated that the cost of living with MS is $70,000 per year. Just think, in one year, we could have paid the house off entirely instead of medical bills! We each have our own individual insurance deductibles to meet. One person living with MS is expensive . . . and we are living with two.
I was diagnosed four years ago. My wife was diagnosed in 1996. Her MS didn’t deter me. I was dating her, I wasn’t dating her disease. It was just part of her.
When I received my MS diagnosis four years ago, I just started laughing. The neurologist thought I was having a nervous breakdown. I had been experiencing weakness and vertigo, and I had been expecting it. The absurdity of it just made me laugh.
Prior to my MS diagnosis, I was my son’s Cub Scout Den leader. When he was 6 years old and we started cub scouts, I would have to carry all of the gear when we went camping. Then I got diagnosed with MS. My ability to be outside and do things with him became too painful. The heat in Nebraska summers was just too much. The last year I was able to go camping with him, I saw that 6-year-old boy, who had become a young man and who at age 11 had to carry everything for his dad. I had my cane and the hiking was so painful, the other dads had to help me.
I want the world to know that they shouldn’t write us off. We’re not as helpless as most people think we are. At work, I use a cane and yet, I choose to take the stairs. Until the disease takes my legs, I’m going to keep walking those stairs. And I’m going to keep working until I can’t work anymore. I keep moving. I keep living.